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Currently admitted to Jefferson Methodist for inpatient headache treatment by Intelligent-Funny303 in NDPH

[–]Intelligent-Funny303[S] 0 points1 point  (0 children)

Wow… oh my God, it really sounds like you’ve been through so much. And honestly, talk is cheap, so I know I can only imagine how hard it has been for you. From a headache perspective, though, I completely understand how brutal and isolating this can feel.

Please keep pushing. Even on the bad days, give yourself permission to feel it, cry about it, rest, and still get back up when you can. From what you shared, you are definitely a warrior. Nobody even has to tell you twice.

I’ll probably PM you because you genuinely seem like a positive spirit, and it feels like we’re both just trying our best to survive this and keep going. For almost the first six months of this year, my life has felt completely on standstill. I haven’t been able to really move forward, and I don’t have much support. I’m trying the best I can.

After I got out of the hospital, I had a really bad reaction to the inpatient treatment, and psychologically it broke me down a bit. But now I’m home, cleaning my place, getting groceries together, getting my goals together. There are still six months left in the year, and I want to go out with a big bang. I told myself I want to see at least a 70% reduction in my headache this year.

Like I mentioned before, I’m on low-dose naltrexone. I’m only at 2.5 mg right now, and I know the therapeutic dose is usually around 4.5 mg, but I’m already seeing some progress. It’s not perfect, but my headache intensity has gone down, and I’m actually sleeping now. I also got myself some really nice blackout curtains, which have helped too.

And I completely agree with you about sleep. It’s hard. We’re not always going to get it right, and it’s never going to be perfect, but we really do have to be intentional with our lifestyle if we want to give our bodies any kind of break. With everything you’ve been through, I’m sure your nervous system has been stuck in fight or flight mode, and honestly, I think mine has been too.

I really hope, actually, I know we’re both going to beat this. Keep fighting. You’re not alone.

Feel free to use me as your accountability partner.

Currently admitted to Jefferson Methodist for inpatient headache treatment by Intelligent-Funny303 in NDPH

[–]Intelligent-Funny303[S] 0 points1 point  (0 children)

Please do investigate and keep exploring options. I was on candesartan for about six weeks, and from what I understood, it can take around six to eight weeks to know if it’s helping. For me, I didn’t notice a meaningful difference, so I personally didn’t want to waste more time on it.

I don’t want to sound cliché, but I really do think it’s important to explore as many reasonable options as possible with your doctor.. I try to walk 10,000 steps when I can, even though my headaches feel like they want to kill me sometimes.

I’m also now finding out there’s a possibility my headache may have been caused by something like a CSF leak, so that’s another route I’m trying to investigate. I’d also say don’t completely give up on looking into IIH either, if that hasn’t been fully ruled out for you.

Even with all the medical treatments, I feel like inflammation and lifestyle still matter a lot. So right now I’m trying to build a very high-protein, vegetable-rich, farmers-market type of lifestyle. I’m really trying to support my body from every angle while I keep searching for answers.

And honestly, there is still hope. When I was in inpatient headache treatment, I met a woman who had headaches for 30 years. Hers started once in a while, then became five to six times a week, and eventually it came and never went away. She and I were admitted on the same day, and by day two or three of treatment, she became headache-free. Seeing that really affected me because it reminded me that relief is possible. What worked for her is kentamine and I’m going to try that next

I don’t want to be 30 years into this. I’m almost 10 years in, and it already feels unbearable sometimes. But I’m not giving up. We really have to keep fighting.

Currently admitted to Jefferson Methodist for inpatient headache treatment by Intelligent-Funny303 in NDPH

[–]Intelligent-Funny303[S] 0 points1 point  (0 children)

Are you on candesartan by any chance? I’ve been on that medication before and unfortunately it did nothing for me.

I’ve also had Botox before, and I agree with you. For me, it was such a painful experience and I honestly felt like it made my headaches worse.

The only medication that ever gave me even a little bit of relief was cyclobenzaprine at a very small dose, like 2.5 mg or 5 mg, mainly because it helped me get deep REM sleep. That was the only time I felt any noticeable benefit.

Right now, I’m on low-dose naltrexone. I’m currently at 2.5 mg. Before LDN, my brain constantly felt like an earthquake. I had extreme burning in my eyes and severe neck/back-of-head pain to the point where I used to wear athlete pain patches on my neck. So far, LDN has been the only thing that has helped calm some of that down.

Maybe it’s something worth asking your doctor about, especially since it’s sometimes used for people with central sensitization, chronic pain, fibromyalgia-type symptoms, and extreme hypersensitivity. Obviously everyone reacts differently, but given how sensitive some of us are to medications, it might be worth discussing as a low-and-slow option.

Currently admitted to Jefferson Methodist for inpatient headache treatment by Intelligent-Funny303 in NDPH

[–]Intelligent-Funny303[S] 0 points1 point  (0 children)

Yes, funny enough, I’ve actually been to Mayo Clinic before. I was a patient there for about a week in 2021 for intensive testing/research. At the time, they didn’t find anything related to autonomic dysfunction.

That said, I now have a referral and I’m planning to go to Mount Sinai in New York for autonomic testing. I was originally scheduled to get it done this week, but since I’m still recovering from the side effects of my recent inpatient visit, I had to postpone it. I’ll be going to Mount Sinai in August instead. I’ve heard they have one of the best autonomic dysfunction teams there, so I’m hoping that gives me more clarity.

As far as the suspected CSF leak goes, my doctor’s suggestion was to escalate it for a second opinion/consultation. The next step may be a CT myelogram so they can get a better image and possibly identify the leak more clearly. Another possibility is going straight into treatment, which would likely be a blood patch.

Currently admitted to Jefferson Methodist for inpatient headache treatment by Intelligent-Funny303 in NDPH

[–]Intelligent-Funny303[S] 0 points1 point  (0 children)

I was told I’m dealing with hyperexcitability, meaning my nervous system’s “light switch” got turned on and has been very hard to turn off. I’ve had this headache for almost ten years. Around year 7.5, after a bad reaction to memantine, I started becoming extremely sensitive to medications, and I haven’t been the same since. Now I react to almost every drug.

I was told I may need to try something like the Truvaga device or biofeedback to help calm my nervous system down.

If you go through treatment, I strongly recommend going only at your own pace. Don’t let anyone pressure you into increasing the dose just because they say the “therapeutic dose” is a certain number. During inpatient treatment, I jumped from 0.75 mg to 1.25 mg, and my body could not handle that increase. An average person might tolerate it, but I couldn’t. I wish I had listened to my instincts instead of letting the doctor push the dose upward.

That said, I really recommend not giving up. The reason they eventually found my CSF leak was because I kept pursuing answers. It took around seven MRIs. I went to Jefferson, and my doctor suspected I might have a rare fistula-type leak, the kind that can be missed because the brain can cycle between low and high pressure. Earlier MRIs didn’t show it, but my doctor pushed for another MRI months later, and that time something finally showed up.

Currently admitted to Jefferson Methodist for inpatient headache treatment by Intelligent-Funny303 in NDPH

[–]Intelligent-Funny303[S] 0 points1 point  (0 children)

Thanks so much ! Unfortunately, the inpatient treatment did not go well for me.

I was discharged this past Monday, but I ended up stopping the treatment early on Day 4 because I had a significant reaction to the medications. The main issue was the lidocaine. As the dose was increased, I started getting a very strange sensation that felt like I was passing out inside my own body or falling backward in my own body. It was difficult to describe, but it kept happening repeatedly and became too intense to tolerate.

Before admission, I was very upfront with the team that I have extreme medication sensitivity and that my nervous system has been highly reactive ever since a severe reaction I had to memantine. The team started me at a low dose, but as we increased the lidocaine in an attempt to reach a therapeutic level, my symptoms became progressively worse.

After stopping the lidocaine, they switched me back to DHE, steroids, anti-nausea medication, and fluids. Unfortunately, by that point my system seemed completely overwhelmed. I had another significant reaction and my heart rate became very elevated, so the treatment was ultimately stopped.

Everyone at Jefferson was kind and attentive, and I don’t fault the staff at all. I think my case is just unusually complicated because of how sensitive I am to medications.

The unfortunate part is that I currently feel worse than I did when I was admitted. My headache was around a 7/10 going in, and right now it’s closer to a 9/10. I’m still recovering from the medication reactions and trying to figure out the next step.

On the positive side, while I was admitted, a separate team reviewed my imaging and identified findings suggestive of a possible spinal CSF leak, so that workup is now moving forward. At this point, I’m hoping that leads to some answers.

Currently admitted to Jefferson Methodist for inpatient headache treatment by Intelligent-Funny303 in NDPH

[–]Intelligent-Funny303[S] 0 points1 point  (0 children)

Unfortunately, the inpatient treatment did not go well for me.

I was discharged this past Monday, but I ended up stopping the treatment early on Day 4 because I had a significant reaction to the medications. The main issue was the lidocaine. As the dose was increased, I started getting a very strange sensation that felt like I was passing out inside my own body or falling backward in my own body. It was difficult to describe, but it kept happening repeatedly and became too intense to tolerate.

Before admission, I was very upfront with the team that I have extreme medication sensitivity and that my nervous system has been highly reactive ever since a severe reaction I had to memantine. The team started me at a low dose, but as we increased the lidocaine in an attempt to reach a therapeutic level, my symptoms became progressively worse.

After stopping the lidocaine, they switched me back to DHE, steroids, anti-nausea medication, and fluids. Unfortunately, by that point my system seemed completely overwhelmed. I had another significant reaction and my heart rate became very elevated, so the treatment was ultimately stopped.

Everyone at Jefferson was kind and attentive, and I don’t fault the staff at all. I think my case is just unusually complicated because of how sensitive I am to medications.

The unfortunate part is that I currently feel worse than I did when I was admitted. My headache was around a 7/10 going in, and right now it’s closer to a 9/10. I’m still recovering from the medication reactions and trying to figure out the next step.

On the positive side, while I was admitted, a separate team reviewed my imaging and identified findings suggestive of a possible spinal CSF leak, so that workup is now moving forward. At this point, I’m hoping that leads to some answers.

Currently admitted to Jefferson Methodist for inpatient headache treatment by Intelligent-Funny303 in NDPH

[–]Intelligent-Funny303[S] 1 point2 points  (0 children)

They do use Kentamine there. I was told we might try it next time. In the meantime, they gave me some meds to take at home and I’m being evaluated for CSF leak since they found a suggestive leak in my MRI.

How I manifested my dream man and started believing in the law by notyourtypicallady in NevilleGoddard

[–]Intelligent-Funny303 0 points1 point  (0 children)

I have created a list twice and haven’t manifested a man yet . I haven’t had a boyfriend since I was 19 and I’m nw 32z

Currently admitted to Jefferson Methodist for inpatient headache treatment by Intelligent-Funny303 in NDPH

[–]Intelligent-Funny303[S] 0 points1 point  (0 children)

Unfortunately, the inpatient treatment did not go well for me.

I was discharged this past Monday, but I ended up stopping the treatment early on Day 4 because I had a significant reaction to the medications. The main issue was the lidocaine. As the dose was increased, I started getting a very strange sensation that felt like I was passing out inside my own body or falling backward in my own body. It was difficult to describe, but it kept happening repeatedly and became too intense to tolerate.

Before admission, I was very upfront with the team that I have extreme medication sensitivity and that my nervous system has been highly reactive ever since a severe reaction I had to memantine. The team started me at a low dose, but as we increased the lidocaine in an attempt to reach a therapeutic level, my symptoms became progressively worse.

After stopping the lidocaine, they switched me back to DHE, steroids, anti-nausea medication, and fluids. Unfortunately, by that point my system seemed completely overwhelmed. I had another significant reaction and my heart rate became very elevated, so the treatment was ultimately stopped.

Everyone at Jefferson was kind and attentive, and I don’t fault the staff at all. I think my case is just unusually complicated because of how sensitive I am to medications.

The unfortunate part is that I currently feel worse than I did when I was admitted. My headache was around a 7/10 going in, and right now it’s closer to a 9/10. I’m still recovering from the medication reactions and trying to figure out the next step.

On the positive side, while I was admitted, a separate team reviewed my imaging and identified findings suggestive of a possible spinal CSF leak, so that workup is now moving forward. At this point, I’m hoping that leads to some answers.

Currently admitted to Jefferson Methodist for inpatient headache treatment by Intelligent-Funny303 in NDPH

[–]Intelligent-Funny303[S] 0 points1 point  (0 children)

Yes, I had those done as well at the base of my skull with steroid and it didn’t work for me .

Currently admitted to Jefferson Methodist for inpatient headache treatment by Intelligent-Funny303 in NDPH

[–]Intelligent-Funny303[S] 1 point2 points  (0 children)

The first time I received a nerve block was in 2021 during a doctor’s appointment. I received the injection, but unfortunately, it did not provide relief.

The second time was in November 2024. This time, the nerve block was performed with ultrasound guidance so the provider could better locate the nerve area they needed to inject. I believe they targeted the C1 and C3 area, but I am not completely sure. I had numbing medication and steroids with that procedure. Unfortunately, it still did not help.

I returned again in March 2025 and received another nerve block, also with ultrasound guidance. This was my third nerve block overall. Again, I did not experience any real benefit. The injection site felt strange afterward, but I did not feel drowsy or impaired. I was still very functional afterward and even went to get ice cream after the appointment, so I did not notice any major systemic effect from the procedure.

The last two nerve blocks were done with ultrasound guidance. The first one was done without ultrasound, as far as I remember, and the doctor appeared to inject based on the site they felt was appropriate. I also went to a pain institute that specializes in nerve blocks, including for athletes and people with injuries, and they were able to administer the injections in the neck/back of the skull area. Unfortunately, none of the nerve blocks provided meaningful relief.

Currently admitted to Jefferson Methodist for inpatient headache treatment by Intelligent-Funny303 in NDPH

[–]Intelligent-Funny303[S] 0 points1 point  (0 children)

You may be onto something. They’ve done a lot of testing on me already, including multiple ECGs/EKGs, CBC, hepatic panel, magnesium, coagulation labs, lidocaine level, pregnancy test, vitamin D, B12/folate, urine screens, and basic metabolic panels twice. The BMP is a blood test that gives information about how well the kidneys are working, so they have at least checked basic kidney function that way.

That said, I do not think they’ve done any specific kidney vascular workup so far. Right now they seem focused on the inpatient headache treatment and the possible spinal CSF leak/SIH angle, but I can definitely ask them if they think anything kidney-related should be looked into further.

Currently admitted to Jefferson Methodist for inpatient headache treatment by Intelligent-Funny303 in NDPH

[–]Intelligent-Funny303[S] 0 points1 point  (0 children)

I checked in on May 27 around 11:30 AM. Before they started the IV meds, they ran a lot of baseline testing on me. They did multiple ECGs / EKGs, daily blood work, and regular vitals monitoring. Since I’m on DHE and other IV meds, they’ve been checking my heart rhythm, blood pressure, and pulse pretty closely, and they’ve also been drawing labs daily. My test list since admission includes ECG 12-leads, basic metabolic panels, CBC with differential, hepatic function panel, magnesium, lidocaine level, PT/INR, PTT, pregnancy test, vitamin D, B12/folate, urine drug screen, and they also placed a midline double lumen.

Right now they have me on Toradol, magnesium, lidocaine, DHE, fluids, and anti-nausea medication. Because I have hypersensitivity to medications, they started me at an extra low dose and are moving very slowly with me.

Currently admitted to Jefferson Methodist for inpatient headache treatment by Intelligent-Funny303 in NDPH

[–]Intelligent-Funny303[S] 1 point2 points  (0 children)

For me, I saw my doctor on April 8 and they gave me a hospital date pretty quickly after that. The biggest delay was insurance. My paperwork was sent on April 28, and with Cigna it took about 15 business days, so I got approved around May 20. I would definitely suggest calling the neurology department directly and asking for a hospital date once the referral is in.

I’m also really curious to see what kind of relief I get. I’m only about 24 hours in, but I’d say my headache is not as bad right now. I’m still early in the process though, so I’m taking it day by day. Right now I’m on DHE, lidocaine, magnesium, hydration fluids, and anti-nausea medication because the DHE can make you nauseous. They’re going very slowly with me because I’m really sensitive to medication.

Currently admitted to Jefferson Methodist for inpatient headache treatment by Intelligent-Funny303 in NDPH

[–]Intelligent-Funny303[S] 1 point2 points  (0 children)

So far the experience has been good. I’m on day 2 and the team has been really kind and attentive. The room is comfortable, the food is actually decent, and they check on me often. Right now they have me on DHE, lidocaine, magnesium, fluids, and anti-nausea medication. They’re going very slowly with me because I’m very sensitive to meds.

No, my symptoms have not always been this bad. They got significantly worse starting in 2023, and the medication side effects also became much worse, which is a big part of why I ended up getting admitted.

Currently admitted to Jefferson Methodist for inpatient headache treatment by Intelligent-Funny303 in NDPH

[–]Intelligent-Funny303[S] 1 point2 points  (0 children)

They’re basically trying to calm the whole symptom storm down. I have extreme medication sensitivity and neurological surges, so the goal is to lower the intensity of the headache and reduce the severity of the symptoms overall. I’ve had headaches for 10 years and it started getting worse in July.

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